Shameem shares her story of living with limb girdle muscular dystrophy (LGMD), including her education and moving to the UK.
My journey with muscular dystrophy: a story of togetherness
My name is Shameem, and I am a proud warrior living with limb girdle muscular dystrophy (LGMD). I was diagnosed in my late teens after several years of uncertainty and confusion.
Growing up as a teenager, I began to experience symptoms that were confusing and frightening, such as frequent falls while running, difficulty climbing stairs, and a gradual loss of physical strength. In India, muscular dystrophy was not widely understood, and finding answers about what was happening to my body felt almost impossible.
As a Muslim woman with multiple intersecting identities, the condition was only one part of the challenge. The societal attitudes, misconceptions, and stigma surrounding disability often felt heavier than the physical symptoms themselves. Navigating these layers of misunderstanding shaped not only my resilience but also my commitment to advocating for dignity, awareness, and equitable support for disabled individuals.
Growing up with stigma
I experienced assumptions that disabled people were less capable or less likely to lead fulfilling lives. Some people believed that a disabled woman would only be considered for marriage if there was significant financial compensation involved. This perspective may not be common in the UK, but it remains a reality in some South Asian communities. Others viewed disability through a lens of pity rather than respect, dignity, and equality. Everyone deserves to be valued for who they are, not defined by their disability.
“I recall being judged for using lifts or requesting accessible routes, with some people assuming I was simply being lazy rather than recognising that I had a physical condition affecting my mobility. These experiences highlighted how a lack of understanding can create barriers that are just as limiting as physical obstacles.”
Hoping for treatment
We invested significant time, energy, emotions, and financial resources into treatments that ultimately could not change the reality of a condition for which there is currently no cure. I underwent therapies such as massage treatments to strengthen muscles, herbal medicines that claimed to improve muscle function, acupuncture, and even consumed preparations containing gold dust because people believed they might help. Looking back, some of these approaches may seem unusual, but when faced with uncertainty, families often cling to hope wherever they can find it.
This period was one of the most difficult times in my life. I felt insecure, frightened about the future, and unsure of what lay ahead. Throughout it all, my siblings were my pillars of support. They cried with me when I struggled, encouraged me when I felt defeated, and reminded me of my strengths when I found it hard to see them myself.
Education helped me accept who I am
When I completed a Bachelor’s degree and later a Master’s degree in Rehabilitation Science at Holy Cross College in India, it transformed my understanding of disability and health. Instead of endlessly searching for a cure, I began to understand the importance of evidence-based practice, self-acceptance, and meaningful support.
Equally important was the exceptional support I received from my friends and lecturers. Their empathy, encouragement, and belief in my abilities motivated me to succeed academically. I was proud to graduate as a gold medallist in my cohort, an achievement that reflected not only my hard work but also the support of those around me.
Following my studies, I worked in India as a Special Needs Educator in an international school. As my condition progressed, I became increasingly aware of environmental and attitudinal barriers that affected disabled people’s participation.
“My decision to leave India was not about rejecting my home country, but about seeking opportunities where accessibility and inclusion might better support my independence and professional growth.”
I moved to Dubai, where I worked in a special education setting.
I consider myself fortunate in many ways. I am married to an understanding husband, Ameer, who has consistently supported and encouraged me throughout my journey. Together, we have a wonderful child, Luqman, whose kindness and thoughtfulness never cease to amaze me. From helping me put on my socks to carrying items when I need assistance, my child demonstrates every day that support can come in simple yet deeply meaningful ways. Their love, care, and understanding have been a constant source of strength, helping me face challenges with confidence and gratitude.
Moving to the UK
In 2023, I moved to the United Kingdom. Adapting to a new country always comes with challenges, but I found reassurance in the stronger emphasis on accessibility, disability rights, and inclusion. While no country has achieved complete equality, I noticed greater awareness of the social model of disability and more structured support systems. These changes allowed me to focus more on my abilities and aspirations rather than constantly navigating barriers.
Today, I work as a Disability Adviser at a UK university, supporting students to access the adjustments, services, and opportunities they need to thrive. My personal experiences have shaped my passion for disability advocacy and strengthened my commitment to helping others navigate their own journeys.
Having lived and worked across different countries and cultures, I have witnessed how disability can be viewed in different ways, ranging from sympathy and charity-based approaches to equality, inclusion, and empowerment.
My lived experience has shown me how national policies, cultural attitudes, and social systems can influence both the opportunities available to disabled people and the way they are perceived by others.
Shameem Banu Showkath Hussain
Disability Adviser, University of Derby, Clinical Level-Orton Gillingham Academy (OGA), Accredited Member of National Association Disability Practitioner (NADP), UK, Neurodiversity Champion, and person living with muscular dystrophy.
